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Six years less than what?

I just finished reading some news accounts about an unsettling recent study that found people with multiple sclerosis lived an average of six years less than people without MS.

That’s pretty disheartening – if you allow it to be.

I distinctly remember being told when I was diagnosed that my MS would likely not shorten my life. So, when I first got wind of this new research, my heart caught in my throat. What had changed?

This study, conducted by scientists at Boston University and three other institutions and published in late December in the journal MS and Related Disorders, looked at records for nearly 120,000 people in the U.S. who were enrolled in a certain health insurance plan between 1996 and 2009. Looking at government records, the researchers found that folks with MS had an average life expectancy of about six years less than that of folks without MS.

The study did not break things down according to disease severity. Nor did it account for the potential effects of disease-modifying therapies, which only came into use with the introduction of Betaseron in 1993, or for people’s general health or lifestyle factors such as diet and exercise.

So, in the end, while the findings are intriguing – and scary – they don’t likely mean that having MS actually shaves six years off of each of our lives.

Even if that were to turn out to be precisely the case, though, the findings have very little meaning to me. Why? Because none of us has any idea how long we will end up living. The truth is that we have no way of knowing whether we have days, months, years, or mere seconds left. So the real question is “six years less than what?”

For my own mental health, I’m placing this study, however well conceived and conducted it may be, in the large and growing pile of things I intend not to let worry me. After all, life is too short as it is.TagsResearch6
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Jennifer LaRue Huget, Blogger

Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children's book author, she lives in Connecticut with her husband, two teenage kids, and two brown dogs. Her website is www.jenniferlaruehuget.com.

When I was diagnosed in 2001, I was told the same thing. You don't due from MS. What occurred to me over time was, MS damages nerve activity that can affect different organs and that is where it gets you. So lungs, kidneys, etc....fail and those are what cause earlier death. But, like you said we are all going to die at some point, could be an accident or disaster or disease. I am not going to worry about it. I will do the best I can to just get on with life.

I think we are blessed to enjoy the time we have on this earth for however long it is. Even if I didn't have MS, I could get cancer or be killed in a car crash, shortening my life span significantly. Really people should not dwell on these things- 6 years less when the average life span is getting higher and higher each year? Not an issue.

I was diagnosed in 2008. I consider it a blessing that treatment and outlook options have changed a great deal since then. At times, the public's general misunderstanding and common misconceptions about MS have been as painful to me as some of my symptoms. I have developed RA and been through a heart attack with MS, and my hope now is to live each day as best I can. I am grateful for so much, mostly four wonderful kids.Thankfully, research, clinical trials and compassion give the MS community more hope each day.

I think some of the reason may be suicide. For one thing, depression is present way out of proportion in people with MS. A friend of mine with MS (not depressed) refused treatment for an infection because she had reached the point of not being able to live outside a nursing home. I think her decision was appropriate. She had been in nursing homes before but had always been able to work her way out and back to home.

I have MS. I also know that I have taken several drugs which can have serious, even deadly, side effects but heading off increasing disability is worth the risk, I'd rather have my life shortened than become totally disabled and dependent.

I expect people with MS may be more prone to accidents - lack of balance, strength, etc. Swallowing difficulties can lead to choking, etc.,

But, there is nothing intrinsic to MS which will shorten your life. In other words having MS does not mean you will die earlier than average or from the MS. The newer drugs will probably help prolong life expectancy in younger MS sufferers by improving their quality of life, ability to exercise, etc. Immobility can lead to all kinds of problems like pneumonia.

I think it's ridiculous! I know of over 1/2 a dozen people who died of MRSA and other infections from being bedridden and obviously not cared for very well, but their death was categorized as dying from MS. What about people who end up dying from MS drug interactions - is that "dying" from MS or because of other circumstances. I think this whole topic is brought up to scare us MS sufferers into more severe and harsh medical treatments for our disease. I walked away from traditional medicine for treating my MS after 15 years because I kept having relapses over and over. When I went the alternative route to treat my body and heal my immune system is when I finally got better. I have been virtually symptom free well over 9 years. I have been living with MS since the age of 17 - that was a little over 25 years ago. To our health!

If I didn't have MS, I would probably be dead. While in the hospital getting treatment for a relapse 8 years ago, they saw an aneurysm in my brain on an MRI. It was unrelated to MS. They told me if it hadn't been found, it probably would have burst and killed me. How lucky I am! :)

The absence of clarity in this study regarding the various types of MS is a flaw that completely undermines any resulting value from the efforts of the researchers. MS can kill. It kills via suicide, typically resulting from the financial and social consequences of having MS. And it also kills when people have severe forms of MS that debilitate them rapidly and leave them vulnerable to the kinds of opportunistic infections and secondary diseases mentioned by another commentator. Most of us, however, will live normal lifespans. It seems irresponsible for the authors of this study to have published. And it seems irresponsible as well for the journal that published this article not to have sent it back and told the writers to clarify the different life expectancy of people with various types of multiple sclerosis.

I have never worried about how this could shorten my life, just what to do next. I was almost done with my Master's Degree when I found out I have this. I am qualified to do something normal that would work well, but a lot of the jobs out there would be very exhausting. I know this because I've tried. I apply for stores but ask for few hours and only refuse to apply for things in hot kitchens. It seems that much harder with MS because jobs are so few and places in the service industry only want people who will do whatever they say whenever. Am I being too picky or foolish or should I just keep going as I am?

Those that conduct studies that do not take all facets of a problem into account are short sighted and irresponsible. Many get the shock value out of their statistics by not showing all the data and how it affects the results of their study. Statistics pulled from insurance documents do not paint the whole picture. Sounds like a good afternoon project to get published in a journal.

I was diagnosed in 1997 even though I think I had the symptoms longer. I was told that the majority of MS patients end up using a wheelchair or cane within 10 years. I am still getting around on my own power and hope to get around for many years to come

I was diagnosed with MS on December 5, 1985. I am and have been taking Betaseron shots since the drug was released. At the time of my diagnosis I was told to not overdue exercise but I had been doing it for at least 5 years prior. When one of my neurologists found out I was pregnant once again he told me it would shorten my lifetime. I have two beautiful sons who are both teachers and I went to community college to become a personal trainer to encourage exercise and its benefits. I think we need to keep in mind that we can play a big role in our own lives and perhaps keep a positive attitude as to what our future might bring. Exercise, exercise, exercise!!!!!

When I was diagnosed in 1995 I read that the average life span after diagnosis for ms patients was 15 years. That scared me as I was pregnant and had 2 small kids already. My baby turned 18 last year and I am still here!! No one knows how long anyones life span will be, so I say to myself ,and you, just get on with it and make it the best you can!! xx

Thanks for you note. Makes me believe and reassure myself that Life is short enough indeed, so that we need to enjoy as much as We can for everything that comes throuh our path. despite any circumstances ENJOY YOURSELF & KEEP GOING...

Sorry to say, I finally believe that we may indeed have shorter life spans because of MS.Seeing that our brains are our main computer and the signals are not always sent properly or at all anymore, other parts of our bodies do indeed suffer.I am convinced that my irregular heart rate is connected to my MS.My cardiologist says I'm wrong.I have crazy irregular heart beats when I'm going through an MS flare up.When it's over...my heart seems to be back to "normal".Because of MS, I have bladder problems, problems swallowing, I stop breathing at the oddest times. I was diagnosed with sleep apnea and found that even with wearing that uncomfortable mask and using a C-pap and Bi-pap machine, I still continued to stop breathing and would end up waking up with a start and ripping the mask off to take a breath.I argued with my pulmonary doctor for months, saying that there was something else wrong, he brushed it off...as many doctors do, thinking that only they, know it all.After reading more about the problem and speaking with another doctor, that doctor came to the conclusion that I have central apnea...due to MS.I no longer use the machines or the masks...they are useless with the problem I have.I guess we can spend each and every day worrying about what's going to happen next with this stinking disease...but it won't change anything.I say...pay close attention to your health, your MS symptoms, read, spend time on your computer looking up every piece of information that you can, talk to different doctors. If you don't feel you're getting the care or the information from your current doctor, don't be afraid to find another one.Live one day at a time.

You know what? Only God knows when your time is up. All you can do is to live your best life. My Dad died at a young age. Soldiers in war die at a young age. People with cancer may die. So, listen to your health, be grateful for each day, and love the here and now, no one knows what tomorrow may bring,Lisa

Nice article. Exactly, too worry about what???I dicovered that life is too short indeed for everyone, with MS or without it.Try to challenge yourself, keep going, Don't GIVE UP!Just as me, a patient of MS from Argentina, living abroad, who kept quiet this condition for 13 years, I am 33 years old, I really need to express how it feels living with MS. I can't walk as a model, I can't manage my stability. However, I believe I am smart enough to keep going with Faith raising my beautiful daughter of 8 months old and being happy with my daughter my husband, family and friends. Just Enjoy yourself! & Get Involved. Stop MS.-

Death is inevitable for all. MS is a disease that can be controlled. Life is full of wonderful good things and one must think positively and not about dying. Death takes care of itself and it is in God's time not in ours. I agree with all those wonderful people who don't let the disease label them or hold them back. Live life to the fullest - be it slow or fast - it is your life.